Researchers at the University of East Anglia and Norfolk and Suffolk NHS Foundation Trust (NSFT) are launching a new project to improve the lives of dementia carers in the UK.
They will work with carers and healthcare workers to co-develop and test a new ‘Carecoach’ support package – backed by £2 million in funding from the National Institute for Health Research (NIHR).
The aim of the blended care initiative is to help dementia carers stay emotionally and physically well – which is crucial for both the carer and the person they support and care for.
The project is particularly important in relation to the coronavirus pandemic, which has left many people with dementia and their carers more isolated than ever.
The project is being led at UEA by Dr Jane Cross from the School of Health Sciences and Prof Chris Fox from Norwich Medical School.
Dr Cross said: “Around 700,000 family carers support 850,000 people in the UK with dementia.
“Dementia is a deteriorating condition where the person loses one ability after another. Caring for someone with dementia puts enormous strain on the family carer’s energies, resilience, physical and mental well-being and family relationships.
“The coronavirus pandemic has put an additional stress on carers, many of whom are older, vulnerable or shielding. It means they can become even more isolated and cut off from their wider support network of family, friends, health services and support groups.
Prof Fox said: “We know that family carers provide significant support for people with dementia with very limited support for them. But it’s really important that carers get the right support too.
“We want to help carers improve their quality and life, mood and sense of being able to care well.”
Previous research has shown that intervening early to support carers builds personal resilience and enhances their ability to cope.
The research team will build on work carried out in the Netherlands, where a ‘Partner in Balance’ intervention has already been shown to reduce the burden and stress of caring for a family member or friend with dementia.
Prof Fox said: “We will develop a UK version of the Partner in Balance programme combining face-to-face sessions, a web-based home programme and support from a coach.
“The Carecoach support package will include additional film clips and other materials to better reflect the UK population and care situations.
“We will work with family carers and healthcare professionals to develop and test our new blended care approach – to really make sure it works in real life,” he added.
Juniper West, research development lead, older people’s services at NSFT, said: “In 2018-19, our research team ran a project to identify top research priorities, involving 126 service users, family or friend carers and clinical staff from our dementia and older people’s mental health services.
“The top priority was around training and support for informal caregivers for people with dementia, so the Carecoach research programme addresses very important, locally expressed needs.
“I have been fortunate to work with Geoff Fenwick, a family carer originally involved in our research priorities project with his wife Susie, who will now work alongside our team in delivering the Carecoach study.”
The research initiative will be led by UEA and NSFT, in collaboration with the University of Bradford, London School of Hygiene & Tropical Medicine, the University of Nottingham, the University of Amsterdam, and Maastricht University.
The team will also work with collaborators including Dementia UK, the Alzheimer’s Society, the TIDE network of carers, former carers and health and care professionals (Together In Dementia Everyday) and INTERDEM (the European network on research into early detection and timely intervention in dementia). Software will be developed by Ilionx.
The project is hosted by the Frailty Research Group which is part of UEA Health and Social Care Partners (UEAHSCP).
Geoff and Susie Fenwick’s story
Geoff has been married to Susie for 31 years, in late 2011 they first noticed a decline in Susie’s short-term memory. In spring 2012 they sought medical advice and Susie was eventually diagnosed with early onset Alzheimer’s.
Alzheimer’s affects people in different ways, in Susie’s case she became anxious and withdrew from friends. She had taken early retirement and was at home on her own – not easy when you are having to accept and adjust to dementia. Geoff, who will be a co-researcher on the new Carecoach study, soon ran his business down and retired in 2015 so he could become Susie’s full time carer.
Geoff said: “Acceptance I feel was probably the first and hardest step to take when coming to terms with dementia, once we had achieved that we were able to take a more proactive approach in adapting our relationship and lifestyle to the demands of dementia. Focussing on what we could do, not what we could no longer do.”
One of Geoff and Susie’s many strategies was to take part in research, both clinical trials and lifestyle assessments. They started Susie’s clinical trial in London in 2013 which is still ongoing and gives them access to possible new treatments yet to become available through the NHS.
They have also found lifestyle research to be equally important as it helps health professionals understand what it is really like for both the person with dementia and their carer.
Geoff said: “We joined this in 2014 and have taken part in several different studies run locally by NSFT and UEA over the last six years – all very interesting and enjoyable for both of us – the kindness and respect we have had from the researchers has been second to none.”
However, Geoff feels Carecoach is different as its ultimate aim is to help carers establish viable techniques and strategies for coping with the challenges that dementia throws up for both themselves and the people they care for. It is not aimed at health professionals, it is aimed at an army of untrained everyday people who need help.
“As a co-researcher and existing carer my involvement in the project will bring vital first-hand experiences to help model the training programme,” he said.
“Personally, it will be a boost for my own mental health wellbeing and hopefully I will learn a few new tricks along the way, as well as being able to share ideas that have worked for us. If you want to know the road ahead ask those coming back.”
Abnormal proteins unleash latent toxicity in neurodegenerative diseases
Most neurological diseases have one thing in common: an accumulation of abnormal proteins around neurons. Researchers agree that these improperly fabricated proteins become progressively more toxic by interacting with healthy proteins, disrupting their functions. This picture, however, may be incomplete, according to a study.
In a recent study published in the Journal of Cell Biology, scientists from Daegu Gyeongbuk Institute of Science and Technology, Korea, have discovered the mechanism of action by which abnormal proteins actually unleash the inherent, but normally latent, toxicity of a natural protein in neurons, causing defects in dendrites (branched parts of a neuron that connect to the next neuron). Therefore, their results provide some clarity as to what actually goes on in diseased neurons. Though the researchers focused on Machado-Joseph disease (MJD), the implications of their results are relevant to other diseases as well.
First, they screened existing data to find candidate genes that were abnormally expressed in MJD patients and mice models. Then, based on the results and using MJD flies as animal models, they identified a problematic transcription factor–a protein that controls and regulates the transcription from DNA of other proteins–called NF-κB. Though this transcription factor is essential for the proper functioning and development of dendrites, the researchers found that something went awry with it when abnormal MJD proteins were around.
Through multiple subsequent experiments, they elucidated a long chain of inhibitory/promoting interactions between native proteins that, at a certain point, clashes with the accumulated abnormal proteins and cascades into a “deregulation” of NF-κB. In turn, this improper regulation unlocks the latent toxicity of NF-κB.
Professor Sung Bae Lee, who led the study, remarks: “Our results open-up a new avenue toward finding cures for neurodegenerative diseases by creating inhibition-based drugs that target improperly regulated latent toxic factors.” Such new potential treatments would directly target the early stages of neuron damage, stopping neurological disorders right on their tracks.
This study lights a beacon of hope for many countries that are struggling to deal with the problems of an aging society. “Korea will become a super-aged society in the near future and establishing an appropriate social system to care for and treat people with neurodegenerative diseases is turning into an urgent social issue,” comments Professor Lee. This might be the first step in a completely new road toward treating these chronic age-related diseases.
Individualised brain stimulation therapy improves language performance in stroke survivors
Canadian scientists are pioneering the use of individualised brain stimulation therapy to treat aphasia in recovering stroke patients.
Aphasia is a debilitating language disorder that impacts all forms of verbal communication, including speech, language comprehension, and reading and writing abilities. It affects around one-third of stroke survivors, but can also be present in those with dementia, especially in the form of primary progressive aphasia.
“Aphasia can be very isolating,” says Dr. Jed Meltzer, Baycrest’s Canada Research Chair in Interventional Cognitive Neuroscience and a neurorehabilitation scientist at Baycrest’s Rotman Research Institute (RRI).
“It can negatively affect people’s personal relationships, and it often determines whether or not someone can continue working.”
In a recent study published in the journal Scientific Reports, Dr. Meltzer and his team tested language performance and used magnetoencephalography (MEG) to measure brain waves in 11 stroke survivors with aphasia before and after they underwent brain stimulation therapy.
The scientists found that the participants had abnormal electrical activity in brain regions close to but outside the area destroyed by the stroke. This abnormal activity was mainly a shift to slower brain waves, a pattern they have also observed in individuals with dementia.
“We mapped that abnormal activity and targeted it using non-invasive brain stimulation,” says Dr. Meltzer.
“We found that the stimulation made the activity more normal – that is, faster – and improved language performance in the short term.”
Previous research has demonstrated that brain stimulation can improve language performance in aphasia patients. However, this study is one of the first to link this performance improvement to changes in the brain activity surrounding the tissue destroyed by stroke.
In other words, this study suggests not only that brain stimulation works in aphasia patients, but also that the reason it works may be because it addresses abnormalities in the brain surrounding the destroyed tissue.
Another novel aspect of this work is that the scientists targeted each individual’s abnormal brain activity with the stimulation treatment. In contrast, the standard approach in previous studies has been to use the exact same treatment, targeting the same brain areas, on every patient.
“Our results demonstrate a promising method to personalise brain stimulation by targeting the dysfunctional activity outside of the destroyed brain tissue,” says Dr. Meltzer.
“Aphasia patients are highly variable in terms of where their brain damage is and what part of the brain should be stimulated for therapy. By mapping individuals’ brain waves, we are finding ways to target the right area to improve their language performance.”
While the participants in this study were stroke survivors, individuals with dementia have similar dysfunctional tissue in their brains, and the scientists are also examining the use of brain stimulation in this group.
Dr. Meltzer and his team looked at the immediate effects of single stimulation sessions in this study. As a next step, they have received funding from the Heart and Stroke Foundation to conduct a full-scale clinical trial looking at the longer-term impacts of repeated stimulation for stroke survivors with aphasia.
However, this study has been suspended because of the restrictions on in-person research participation due to the COVID-19 pandemic. In the meantime, the scientists have pivoted to optimize other aspects of aphasia treatment.
With additional funding, the researchers could test different types of stimulation with more patients over more sessions, allowing them to make faster progress in developing this treatment for individuals with aphasia.
Living with a spinal cord injury and maintaining good mental health during lockdown
In conjunction with Mental Health Day 2020, Irwin Mitchell organised a webinar offering valuable insights into maintaining good mental health for those affected by Spinal Cord Injury (SCI).
The speakers were a mixture of professionals and people living with a SCI.
Dr Parashar Ramanuj, Consultant Psychiatrist gave an in depth clinical insight as to what a person who has recently sustained an SCI may be dealing with and what ‘coping’ really means
Sophie Lester, a case manager and spinal occupational therapist provided some really helpful guidance on how to maintain good mental health alongside rehabilitation and sustaining a healthy balance.
Ian Younghusband and Anne Luttman-Johnson provided first-hand insight into specific challenges of living with SCI and offered tips, advice and practical strategies to develop coping mechanisms in support of you and/or your loved ones.
The webinar offered some invaluable tips, but after seven months of different degrees of lockdown there were two key points that struck home with me. These were firstly the importance of reaching out to friends, family and charities and secondly keeping to some sort of daily routine and structure which includes hobbies, interests and exercise.
Lockdown was difficult for everyone, but especially for those who were deemed to be high risk. For those living with a SCI, a common cold has the potential to be life threatening. Most people with a SCI live with suppressed immune systems and/or possible respiratory issues, and so the possible impact of coronavirus has the potential to be devastating. Accordingly, people with a SCI were considered to be potentially high risk and were advised to shield.
For anyone who was asked to shield, in order to protect themselves, they were advised to isolate and effectively cut themselves off from their families, support networks and normal daily routines. This would have undoubtedly had an impact upon their mental health and wellbeing.
In response to the growing situation, a number of positive and innovative projects have been launched to support the tens of thousands of SCI people who were isolating.
The Spinal Injuries Association (“SIA”) set up a movement, Together in Isolation. The SIA along with other charities and partners, joined forces to support and provide advice to those living with a SCI.
This included weekly inspirational blogs, an online drop-in café at 3pm every Wednesday with SCI Nurse Specialists and Horatio’s Garden providing gardening tips. Back Up, another national SCI charity also set up an online BackUp Lounge for people to just chat.
NeuroKinex is a not for profit organisation which in usual times, provides hands-on activity based rehabilitation for those living with an SCI. They continued to provide therapies and treatment virtually for a number of their clients, providing continuity of their rehabilitation, treatment and routine.
Online accessible experiences
Accessible exercise and fitness and wellness experiences have also become available online, to assist wheelchair users to continue to access exercise from home.
AirBNB launched their ‘experiences’ back in 2017, but when travel had to stop, these converted to virtual experiences with the option of filtering your results to those designed for accessibility. The experiences which have been featured include seated fitness and wellness experiences including Cardiobox, seated adaptive yoga, wheelchair dance and fitness, Mindfulness and Positive thinking with Paralympic heroes. Back Up moved their national wheelchair skills to virtual videos.
Additionally a number of free accessible exercise videos have been shared on social media. Ella, a GB U25 Wheelchair basketball player created Ella’s Wheelchair Workouts, a page on YouTube and Facebook offering and sharing exercise videos to do at home. She does this in conjunction with GymPossible an accessible gym in the North East who then started to produce adaptive fitness videos online.
The last seven months have been tough for everyone, and I am sure that it has had a huge impact on mental health across the country. But I am encouraged by the innovation and sense of community fostered by the use of online and virtual communication which has been sparked by this pandemic, and hope it has assisted some people to be able to continue with accessing their support networks and connecting with others, while participating in their hobbies and exercising from home.
Having access to positive experiences, friendships and exercise virtually when we can’t be there in person helps maintain good mental health. And although it doesn’t replace face to face in person experiences, I am hopeful that this positive community movement continues when life returns to what will be our new ‘normal’.
For those who are interested, I would really recommend watching the webinar recording which gives practical tips and guidance. This can be seen below:
Written by Jessica Bowles, a solicitor specialising in serious injury with a specific interest in Spinal Cord Injuries and rehabilitation at Irwin Mitchell.
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